Healthcare professionals, families, and researchers are working together to explore ways in which perinatal palliative care can be enhanced. Below is information about some current studies which are taking place.
If you are interested in finding out more, or getting involved, please do get in touch with the researchers using their information below.
Death in the first 28 days of life, or ‘neonatal death’, represents the highest number of deaths in children under 5 in the UK. Each year 1,200 babies die during this period, with most neonatal deaths happening on neonatal units where babies receive treatment from specialist doctors and nurses. For many families, conversations will have occurred with professionals around whether or not to continue with lifesaving treatment for their babies. If it is agreed continuing treatment is not in babies’ best interests, palliative, or ‘end-of-life care’, will be provided to babies and families.
What constitutes end-of-life care, however, is unclear and professionals often provide different treatment to different families, reporting different outcomes in their research. This means we cannot compare whether one approach to neonatal end-of-life care is better than another. Creating a common, or ‘core’ set of outcomes from which to measure neonatal end-of-life care would allow us to develop measures of good practice and improve our care of families. These outcomes must reflect the needs of families involved; these are currently unknown. This is particularly relevant for Black, Asian and Ethnic Minority families whose infants are at significantly higher risk of death than other populations.
When parents face the difficult news during pregnancy that their baby is affected by a serious health condition, they rely on health care professionals for advice and support. This research aims to better understand the experiences of the families and health care professionals in this situation and to examine the ethical considerations in providing supportive care to families before birth.
The research team will examine what is said to parents in consultations during pregnancy and conduct interviews with both parents and health care professionals to understand the challenges they face.
The research findings from this project will lead to recommendations for professionals who work in antenatal care in order to enable compassionate and supportive care for more families in the future.
Below are some research papers which have been published in the area of perinatal palliative care:
